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Gluten Challenge. Ugh.

2 posts in this topic

So I was "mostly" off gluten for 3 years (not worry about crumbs in the peanut butter, eat some icing off the cake at work, still eat soy sauce etc), and feeling good. I had classified myself as NCGI because I had some negative TTGs before going off. I decided to do the genetic test in the hopes that I didn't have a celiac gene, and would then feel quite fine doing my "mostly" diet and not causing any long term health problems vs doing a poorly controlled celiac person's diet. Lo and behold ... DQ2 AND DQ8 possible. Oh well, so much for that strategy.

Now I'm at the 2 month mark of full gluten challenge - hasn't been fun. My ibs is worse, but the worst is my skin - I have overall itchyness, random mouth sores, swollen scaly patch on the edge of my lip that won't go away, fatigue, irritability, and somehow my husband is still hanging in there with me! My usually clear skin is covered in tiny little bumps (not exactly acne, although I have some of that on my face too) but if you look close it's millions of little skin coloured bumps, like keratosis pilaris but all over my neck, shoulders and back. Yuck!! I haven't changed anything else. I always feel like scratching (but don't). My joint stiffness is worse (I also have ankylosing spondylitis and am on a biologic and celebrex).

I was planning on doing 2-3 months, but I'm so done!!! Going for my labs this week and then probably I'll book an endoscopy asap.

In the meantime, I have been checking things off my gluten "bucket list" - this week I had mcnuggets and fries (yum! eat that about once every 3 years anyways), and a mini Cinnabon. In heaven. Food cravings, however, are out of control. I need my test results back before I gain too much weight!!

Anyways, I'm amazed I made it this far, can't wait for my skin to clear up. Anyone else get these funny bumps all over?? I've had it on the backs of my arms before, but this is ridiculous (and gross).

Hopefully I'll be posting some negative test results, and happily going back to my "celiac-lite" diet and feeling way better, and clearing up before the warmer weather and lighter clothing arrives!!

Thanks for reading :)


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Just wanted to throw something else in there, though you might not thank me :). I tested negative for celiac from blood and biopsy, and then in a gene test. I been gluten light for years. I did 3 weeks of a gluten challenge, which was enough to convince me to try strict gluten-free. I have found a massive difference between gluten-free and gluten light, I have my life back.

I have been diagnosed non celiac gluten intolerance, on the basis of my response on and off gluten, and medical history.

I am not saying it will be like that for everyone. Might be worth considering a short spell strictly gluten-free.

Good luck


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    • I have not taken him to a dermatologist. I have dapsone, which I put on the rash, it always clears up. I have it for another family member. But then I started reading about celiac and all these dots are out there but not connected.  The next time he has the bumps, I am going to take him in. In the mean time, I am trying to find a dermatologist who understands the condition. I don't want my kid to have celiac. And I kinda feel crazy for thinking he may have a gluten issue but with it in my family and him having these other things, I want to be dilligent.   i will read up on the test you suggested. Thanks for taking the time to read and respond everyone.   
    • I tested positive to deamidated gliadin in August at a hospital. My old GI tested me using gliadin (the test listed on your result) in September and it was negative. Literally the next day, my new GI tested for deamidated gliadin again and it was positive (I was unaware the hospital scheduled an appointment with the new GI for follow up).  If you still suspect it, Google deamidated gliadin, print out the Mayo clinic lab info and circle the part where it says they have discontinued the use of gliadin in favor of the deamidated gliadin.  Has he seen a dermatologist?
    • He has a rash on his fingers from time to time. Angular Chetelis. Mouth sores. So skinny. Anxious. 
    • The blood test results are negative (and he had the complete panel).  No GI issues (per your posting).  What makes you suspect celiac disease?  
    • Hi WS, So sorry to hear your not feeling quite right just yet. I can relate! I believe in doing whatever is needed for you to be able to come to terms with the diagnosis, which it sounds like was given to you already but if you still need further evidence then do whatever is needed!  In regards to food, I am a pescatarian so I also don't eat meat but I get my protein from some seafood, eggs, beans, natural protein replacements, exct...I was vegetarian and found it extremely difficult on the gluten-free diet for my lifestyle. I found probiotics have really helped me but even now I still feel off days with my digestion and I think that just comes with having a digestive disease. I know what foods trigger it (Yes gluten-free foods!) and try to stay away. I remember the first month or so I was very sick from removing gluten, almost like withdrawal symptoms. Probably because I ate a lot of it prior so it was a shock. 3 1/2 years later, I still feel weak and light headed if I don't eat enough carbs/protein. Celiacs are known to have deficiencies already so your nutrition intake/supplements are super important! I hope your able to find peace with your health and get the answers your looking for! Let us know an update -Cristina  IG: ifitceliac
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